fish testing or lack of

[rubberlegs68]

Hi, I'm new to this group. Was diagnosed in 2011 and had first treatment of six rounds of FCR in 2013. Remission was about two and a half years. Have been on Ibrutinib for about 16 months now with 2 dose reductions along the way. My concern is I was never tested for mutations or deletions and when I have asked the 2 oncologists I have had as to why their reply has been that they didn't think it would change the course of treatment and that it was expensive to have these tests. Perhaps that is true as I am doing ok on Ibrutinib but those answers have never set well with me. It seems from reading that most others have had these tests. I know that there may be another form of treatment down the road for me and wonder also if the information from these tests may be of importance then?

[Spacee]

What little I know is this, the FISH test can tell you if you will respond to chemo or not. My hubby’s test showed he would not. Since you did respond to the point of remissions for about 2.5 years. And now on Ibrutinib, you seemed to have gone the correct way in treatment.

And do invite others to put their opinions in, cause I am certainly not a doc.

My hubby starts Ibrutinib in a couple of weeks. He showed signs of

CLL the end of 2014. We have watched his white count slowly rise but

not any bad symptoms. CT scan did sound some enlarged lymph glands.

Best to you!

Linda

[cllady01 Former Volunteer]

rubberlegs68, if you are seeing a hematology/oncologist, you have most likely had the tests when you were first diagnosed or before you were first treated. The reason we even know about those tests is we have asked for our own personal copy of the report with any blood test or scan.

Those are available to you as the patient and payer of your medical care. If you haven't asked for anything to date, and want to know your CLL profile, ask for all the tests that have ever been done. FISH, IGHV, Flow Cytometry. Since you have been treated already, there should be some available info from testing.

All that information should be in the Drs'./clinics' computer files and be printable for your use. Because of the delayed request in relation to the time of the tests, there may be a fee charged for time to retrieve, but most likely not.

The best outcomes for patients comes when we can be as much a partner in our care as possible. A good Dr. worth his salt, will appreciate that you want to know. Use the names of the tests and any other information you have picked up here to let him/her know you are becoming informed as a patient.

Best wishes, and let us know how it goes.

EDITED by cllady01 for clarity of facts that some tests are done as diagnostics while others are not done until it is evident treatment is near.

[rubberlegs68 in reply to cllady01]

Thanks cllady01, I have asked about the fish test and was told it wasn't done. I see my oncologist the end of this month and will approach this subject again. I know it won't change the present treatment but seems to be important when choosing the next one.

[cllady01 Former Volunteer in reply to rubberlegs68]

I agree with cajunjeff , and can't imagine how you could be treated properly without the proper tests.

Here are the NCCN Guidelines for you to read and download---use the information to ask questions showing you are wanting to be informed and a partner in any treatment decisions.

nccn.org/patients/guideline...

EDIT: I misspoke in regard to diagnosis above in first sentence, and have now corrected that to be treated. It is when treatment is possible/probable that calls for all the in-depth tests. Since you have been treated twice, now, there should be tests that have been run.

[cajunjeff]

It feels presumptuous to be a lay person disagree with trained oncologists, but based on the literature they are wrong.

Both FISH and mutation status inform treatment decisions. There is a consensus among experts, for example, that FCR is a not an appropriate first choice for 17p unmutated cll.

I do not know where you are, perhaps there are limited treatment options.

But I do not know of any true cll specialist who would not think FISH and IGHV testing is important. I do think that IGHV testing, outside of major cancer centers, is not a test that is routinely done. I would think FISH would be ordered by just about any doctor who has cll as a part of his regular practice, certainly before starting treatment.

Was the standard different 8 years ago when you started fcr? That I am not sure about.

[rubberlegs68 in reply to cajunjeff]

I don't think my location is the issue as I live in a city with up to date healthcare. I was in good shape and no other health issues when I started chemo so maybe they thought FCR would be best for me at that time. That doesn't explain the lack of testing before initiating Ibrutinib though.

[cajunjeff in reply to rubberlegs68]

I would think FISH, at a minimum, testing would be done before ibrutinib therapy as well. I suppose an argument could be made that since ibrutinib treats basically all types of cll that FISH testing or IGHV testing would have made no difference in the decision to give you ibrutinib.

I would counter that, it could make a difference in future choices, that is, what your FISH was before and after ibrutinib therapy could inform a doctor making a future decision. I believe more information is almost always better than less.

My first oncologist did FISH testing right away on me. He did not seem to even know what I was talking about when I asked about IGHV testing, which was one of the reasons I left him for a specialist. That said, and while I think IGHV testing is important, I still dont think its a routine test for cll. It should be.

[AussieNeil Administrator]

Hi Rubber legs,

Because you have posted near identical posts, I have turned off replies to your other post and redirected replies here.

I agree that you probably should have been tested before starting FCR. It was possible in quite a few US centres to get access to non chemo treatments back then. Nowadays, even outside of the USA, FISH testing is done to determine if non-chemo treatment is a better choice. FCR just doesn't work well with some mutations i.e. 17p and TP53. Testing now wouldn't have changed the decision to go with Ibrutinib.

Neil

[rubberlegs68 in reply to AussieNeil]

thanks Neil, I realize now that I posted twice. Learning my way on the site. Curious if a 2 and a half year remission with FCR would indicate that I was not mutated? I believe my remission would have been longer if not having to deal with other life issues that kept me stressed for quite awhile.

[AussieNeil Administrator in reply to rubberlegs68]

Most likely not IgHV mutated for such a short remission...

[haposwald]

Yes get the test. After reading with some help (doctor ease) so I could actually understand it I felt much more relaxed I think it’s best that you know as much as possible about your disease! I always say I’m an AD ( almost doctor) in jest but I try to know as much as possible! Good luck

[Smakwater]

rubberlegs68,

Begs the questions, "Why will it not change the course?", and "to expensive for who?".

Who eats stake while the other eats straw?

Yes?

JM